Jump In: A guest post

I love the ocean. I always have. The amazing power of the waves and the vast immenseness of it never cease to create awe within me. I am not, however, a true ocean swimmer. I’ll swim like a fish in any pool but the minute I can’t feel the sand of the ocean bottom beneath my feet I panic. I’m suddenly adrift in an ebb and flow that is clearly larger than anything I can control. Suddenly the bigness of the ocean is too big for me and I just want to be back on steady ground.

I also love my Jesus. Always have. I grew up in a Christian home and started following him at an early age. I passionately loved and served him to the best of what I had in me. Looking back though I can see I always held a little bit back. There was something about God that was too wild for me. I would never have admitted it, but much like the deep of the ocean I got scared when I couldn’t control the God I was serving. When I couldn’t figure him out I stayed near the known comfort-zone of the shore.

God must see the path I’ve laid out for myself as a toe dip in the ocean of an amazing story he has designed especially for me.  I imagine he must laugh at the dreams I have for myself. Not a mocking laugh but an “I am so going to blow you away” kind of laugh.

For years I walked along the edge of God’s story for me with a toe dip here and a splash there. I spent my energy trying to outrun the waves that tried to sweep me in. Like a young child I would let the foam catch my toes and then run like mad for the shore. The shore was safe, the shore was known, and the shore was controllable.

Tattered and broken:

Then without warning the waves overtook me in the most devastatingly beautiful way. At the ripe age of 26 in the space of 15 months my life went from planned and controlled to tattered and broken. A debilitating incurable disease contacted on a mission’s trip to Asia, a severe birth defect discovered in both knees, and a lost job…. just to name a few. Not only had the waves overtaken me, but I was out to sea and barely keeping my head above water.

As pieces of my life fell down around me I had a choice to make. Either be swept under and live in fear or catch the wave knowing my Father was leading the way. I chose to swim. My life wasn’t in tatters because of things I had done, I had been living my life well and loving my Jesus faithfully. However, I had been living my life safe and as controlled and near the shore as possible. Many of us live our whole lives in safe and controlled mode. I believe God can bless us as we move along in that place, I also believe he blows the top off of the blessings when we let go of control and live in the unknown. Those scary waves are right where God desires us to live, for it is there that we truly begin to glimpse just a piece of all that he has for us.

Catching the waves:

If I’m in then I am all in. Once I made the decision to catch the waves and swim there was no looking back. I entered into four of the most scary, painful, and least-controlled years of my short life to date. I also experienced more of God than I ever imagined. I began to know Him as my Great Redeemer, as my Provider, as the Lover of my Soul, as the Author of my story, and as my Healer. As He gently guided and navigated the waves for me I found healing and wholeness in places I didn’t even know were broken.

For those of us who have ridden that wild unknown of an adventure with Jesus there is no going back. The adventure is not safe, it is not comfortable, and it is nowhere near the shore. However, I can testify that I would chose to be nowhere else. God has taken my broken tattered pieces and is creating a story unlike anything I could have ever imagined. When you are whole and healthy there is no limit of what God can do in and through you.

Swim my friends, jump in with both feet!

“See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland.” Isaiah 43:19

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After living in 10 different states and overseas in Austria Melissa currently makes her home in the great state of Iowa. As a children’s ministry consultant and coach she travels extensively training, speaking, consulting, and more in relation to kid’s ministry. Her first book collaboration was published this month and is available on Amazon. She’s passionate about being Jesus to a hurting world. She’s also passionate about reading on the beach, finding a good golf game, and eating froyo in every state she visits. You can find out more at www.melissajamcdonald.com .

Flashes of Color

As we drove to Mayo’s hospital, Ellie talked. She talked about how excited she was to stay with Grandma Chachi for a few days, and the fun things she would do with her aunts. Andy and I listened mostly, distracted by thoughts of Nichole and what the prognosis would be.

 At times, we drove in silence. I thought about Jennifer, Ellie’s best friend with Down syndrome. A little girl I had watched for a year and had fallen in love with. It amazed me how little I ever thought of her diagnosis. Jennifer’s life was beautiful.  My baby, like Jennifer, was God’s precious gift.

“I don’t think I can do life without her.” I finally confessed.

“I can’t either” Andy responded.

At St. Mary’s hospital, my mom waited for us in the lobby with my sister Luisa. She hugged me tight and kissed me.

“We will take care of Ellie, don’t worry. And we will be praying. We have everyone praying at church too.”

“I know” I said, “We are grateful for all the prayers.”

We made our way to the third floor of St. Mary’s hospital. They were waiting for us. On Nichole’s crib laid a set of diapers, wipes, and a cozy blanket. The nurses were friendly and caring. They made small talk, smiled, and offered to help us get comfortable for the night. We realized, from their attitudes, that even if Nichole had biliary atresia, which was serious and potentially fatal if not treated, it did not mean she would die. Tests would not begin until the next morning. We had an entire evening to sit and wait.

A “Child Life” specialist, a sort of social worker, came into the room and offered several things to make us more comfortable. Among those things, was a laptop, so that we could check our e-mail and keep in touch with our family. We accepted the offer and she was back within minutes with a computer.

The first thing Andy did was research “biliary atresia.” He wanted to know what tests would be done, and what those were for. While he was glued to the laptop, I was glued to the pump, making sure my baby would have milk.

“I think we need to find out as much as we can about Down syndrome,” Andy said as I fed a bottle to Nichole.

I had checked out every book on Down syndrome available at our local library. All of those books had been depressing. Pages on all the ways my baby would be different, inferior, and broken. Words describing all the things that could go wrong, and the many challenges we would face. Every time I had tried to read one of those books, I had closed them after a few pages and cried.

“On-line?” I asked.

“Yes, on-line, but also we should go to Barns and Noble and get some up to date books. Not those outdated ones from the library. I think that is all garbage.”

“Okay” After a pause, I added, “Maybe we can go while Nichole takes s a nap.”

Later that evening, we walked into our favorite bookstore; a preferred place for our date nights. For the first time, we searched for the “special needs” section. When we found it, we were amazed at the hundreds of books on the shelves. 

I have been so blind at the world around me. I never really noticed children with special needs, but there are so many…

Autism. Aspergers. Cerebral Palsy. ADHA. ADD. Sensory Processing Disorders. Turette’s Syndrome. Spina Bifida. Deafness.

The list went on.

Finally, squeezed among the many books, I noticed the words “Down syndrome.” I pulled books out of the shelves, trying to decide what I wanted to read. I did not want lists of doomed futures. I did not want guides on how to teach my child gross motor skills or speech. I was looking for hope, for dreams, for a bright future.

Andy walked to me and handed me a book.

“I think this is the book you need to read,” he said.

On the cover, a naked baby was held by the strong hands of a father. White letters in contrast with a gray- blue background that surrounded the picture read, “Gifts.” Underneath the photo, the subtitle, “Mothers Reflect on How Children With Down Syndrome Enrich Their Lives.”

I quickly flipped to the back cover, “Having a baby with Down syndrome is not something most parents would willingly choose. Yet many who travel this path discover rich, unexpected rewards along the way.”

I could feel my heart beating faster. I opened the book to the foreword and read the first line. “Your life will have flashes of color you never knew possible.”

My life will have flashes of color I never knew were possible.

Those words, so real, carried with them great power. The hope and dreams I was searching for were contained in that sentence. I held the book close to my heart. In the middle of the aisle at Barns and Noble, I kneeled down hugging a book. Tears showing up once more, I closed my eyes in an effort to make them stop. Yet tears kept pouring out. And through my tears, I smiled. Because for the first time, I was not crying because I was sad, I was crying, because I knew my life would have flashed of color I never knew were possible.  I was crying, because I had been given a gift.

Next: So Much Love

Don't miss:

Road Marker 321 
My Body Is Cooking a Baby: Part 1
My Body Is Cooking a Baby: Part 2
My Body Is Cooking a Baby: Part 3
The Dream
Level 2 Ultrasound
Your Baby Might Have Down Syndrome
Surprised by Joy: Part 1
Surprised by Joy: Part 2
Surprised by Joy: Part 3
Surprised by Fear
We Belong Together

A New Family

She Has Down Syndrome 

Nursing 

She Has a Broken Heart 

Fooled Them All 

My Mother's Arms 

Tears Flow 

She Is My Own 

I Chose Love: Part 1 

I Chose Love: Part 2

Nina's Health Update

We went to Mayo today to meet with Nina's pediatrician and go through all the test results. Her doctor is wonderful! He is so gentle with her and he has really listened to all of our concerns.

He went through all of her blood work first. What we know is that all of her vaccines are up to date, she does not have tuberculosis, she has no STD's, no HIV, all her blood counts are normal, liver function normal, nutrient absorption normal, and she has no parasites.

Her echo actually came back showing her heart is fine (so I really did worry for nothing!)

And her aspiration report had already been shared with us as we are already doing something about it as well as having surgery. He did a great job at explaining with easy terms what Nina's surgery procedure will entail. Oh, and her surgery will be April 22!

Nina has not gained any weight, and today she was even bellow what she was last week. The doctor thinks that it will take a while for her body to get used to her new diet and lifestyle, so he said to just wait a while, and add calories to her. We are doing Carnation Instant Breakfast (and really, what kid does not like chocolate milk!) We just need to check her weight, height, and head circumference every month for six months and then see if we need to check into anything else that could be going on. We hear this is normal with older children that are adopted from oversees.

It was all great news to hear, so we are feeling encouraged. Now we can really focus on her mobility issues and she should be getting her braces on Wednesday.

Thanks for praying!

Nina's Health Discoveries

Last month I posted about our 2 days in Mayo. I mentioned that what was our general pediatrician and neurology appointment had trickled into seeing many more "ologists." The last 2 days we have seen these "ologists" who will in turn have referred us to more "ologists" and have resulted in scheduled surgery for next month.

Today our day started by meeting with an ENT. They are pretty concerned about Nina's aspiration, and her tonsils might be contributing to the problem. Next month, Nina will have her tonsils out, and they will look at several parts of her throat as well as her lungs. I think there are 6 procedures that will take place. Right now they are all jumbled up together so I cannot tell you all that will happen. But, we will stay over night, and they did go over some risks (like a punctured lung or severed vocal chords, which freaks me out!). This is all because of her aspiration, and we need to check and see if this has been going on all her life, and if there is any permanent damage done to her lungs and throat.

They could not check her ears due to excess wax, so her ears will be cleaned while she has her tonsils checked. Also, they decided we might as well only sedate her once, and her MRI most likely will happen that same day.

Yes, April 22nd will be a huge day for Nina!

Rehab doctor checked her over and Nina is now scheduled for a round of Botox injections. She is going to have some pretty good looking legs! Ha! Botox is used to help the nerves stop firing a signal to the brain, therefore, the muscles can relax and her legs will not be as tight.

We added an X-ray in there.

Then we had an echo. I asked the technician at the end if there was anything we should be concerned about. I am no expert on heart ultrasounds, but something looked funny. Her response left me very uneasy. "Sorry, I cannot tell you what I saw. They told me your doctor will go through those results with you." So, there is something, because she did not say, "No, nothing to worry about."

Then, we had a bonus appointment with an audiologist (ENT thought we should see him.) let me tell you, I think this doctor has to be the best kids doctor EVER! Loved him! And Nina did too! Verdict, Nina has great hearing on her left ear, but very limited hearing on her right ear. They will have to recheck once the ears have been cleaned out and they make sure there is no fluid.

Top it off. Nina has gained NO WEIGHT since we got her. She is almost 4 and only weights 26 pounds. Could it be the heart? Could it be aspiration? Could it be something else? I don't know! We will know more on Monday when we go back and go through all her results.

So if you think about Nina, will you pray for her? Pray for her body, and pray for wisdom for the team of doctors working with her.

I am exhausted, I will go to bed.

Swallow Study

Today Nina had a swallow study done.

Almost every time that Nina takes a drink, she kind of chokes a little and starts coughing. Sometimes it is pretty mild, and sometimes it sounds a little "alarming." There are times that even her saliva will send her into a coughing frenzy. And for this reason, she had a swallow study done to check for aspiration.

So let me tell you what this means for Nina. Basically when she drinks thin liquids, her epiglottis is not working properly. By all means this is the easy way to explain it because this is how I understand it. You will see in the picture below, that the epiglottis is a membrane (or muscle?) between the esophagus and trachea. This membrane is supposed to "move down" as part of the swallow reflex to close of or protect the trachea, vocal chords, and lungs in order to keep out food and liquids.

Well, Nina's does not close down when she drinks thin liquids, which is why she starts coughing. She is in fact aspirating. It seems like her liquids need to be "honey like" consistency in order for her to swallow properly.

What was the swallow study like? They gave Nina barium to drink and basically took an X-Ray video to see what her throat was doing. She aspirated every time until we got to the honey like consistency.

Food is another story, but she is not aspirating, so we will leave it at that. We don't have to be concerned about it, so we will let it be. In Nina's case, this is part of having Cerebral Palsy.

So from now on, we will be thickening all of Nina's drinks to a honey like consistency. Oh fun! Actually, I really don't mind it, I am thankful that she does not need a feeding tube.

And, Nina loved the plain barium! They ran out of koolaid to disguise the flavor and wouldn't you know it, she loved it! She would have no more koolaid stuff. Now what did they feed her at the orphanage? She likes barium? We cannot get her to eat, but she will drink barium!

I did leave thinking maybe Nichole needs a swallow study done too.

The way back home was hard. Nina cried the last 40 minutes. It was draining. Andy pointed out she was displaying orphanage behaviors, we had not seen some of these for a while. Makes us wonder what really triggered it, what is going on in her little heart and mind.

So tomorrow we go back for another full day. You can keep us all in your prayers.